Ambiguous multiple sclerosis symptoms cause many patients to face a wrong diagnosis. One patient's story highlights some of the stumbling blocks you may be able to avoid.

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One day seven years ago, Kimberly Macalaster-Klapprodt, woke up to find that the upper left part of her face was numb. “I thought, ‘This is weird’ and went on with my day. I even joked about it with my co-workers,” recalled the now stay-at-home mom in Boone, Iowa.

But when she developed dizziness and a crippling headache the next day, she stopped joking and went to an urgent care facility. That’s when the saga of Macalaster-Klapprodt’s multiple sclerosis (MS) diagnosis began. It was exhausting experience that many patients who are eventually diagnosed with MS can relate to.

“Plus, there is no litmus test, like a strep test, for MS, so patients have to rely on a clinical diagnosis,” said Karen Blitz-Shabbir, MD, director of the Multiple Sclerosis Center at the Cushing Neuroscience Institute of the North Shore LIJ Health System in Manhasset, N.Y. As a result, many MS patients initially get a wrong diagnosis.

In Macalaster-Klapprodt’s case, "at the urgent care facility, the doctor on call talked briefly with me and said, ‘Well, you look fine,” she recalled. The ER doctor’s diagnosis for the confused patient? A pinched nerve in her face.

For the next two days, Macalaster-Klapprodt felt terrible. “My speech became slurred, and the numbness spread,” she said. She spoke with her sister, an RN, who sent her back to the ER to rule out a stroke. “I had an MRI, which confirmed one spot on my brain,” she said. “The neurologist on call decided I had had a stroke, and the physician’s assistant who saw me advised me to increase my exercise.”

But a stroke was the wrong diagnosis, and the confusing symptoms continued. “The numbness in my face spread to my lips and went deeper, and my speech became more slurred,” she said. “I was prescribed speech therapy and physical therapy.”

Two months later, Macalaster-Klapprodt woke up with numbness in her right leg, and an MRI showed that the spot on her brain had grown larger. “At that point, the neurologist told me I either had a rare form of MS or a brain tumor in an inoperable location,” she said. “I had a private chat with God and said, ‘I think I’ll take MS, please.”

It turns out the brain tumor was the wrong diagnosis, and another relapse and MRI confirmed multiple spots on her brain. She had relapsing-remitting MS. “Hallelujah — I had a diagnosis!” she said.

The Importance of an MS Diagnosis

It took seven months for Macalaster-Klapprodt to get that MS diagnosis. But however unreasonable that sounds, it takes even longer for some MS patients who receive more than one wrong diagnosis — including Lyme disease, depression, and other neurological conditions — over many years before they get the real answer.

Although there's no cure for MS, the sooner a patient receives an MS diagnosis, the sooner he or she can be treated with medications that help manage the disease, especially in the initial stages of MS, said Dr. Blitz-Shabbir. “So if we can give MS medications early, we can slow down the initial inflammatory phase and better prevent potential disability,” Blitz-Shabbir added.

Macalaster-Klapprodt is living proof of the power of a proper MS diagnosis and quick medical intervention to find the best treatment. After a few relapses on the MS drug Copaxone, she now takes Rebif. “...I have not had an MS relapse in two years, and none has been as been as awful as my first incident,” she said.

The morals of her story are clear: Don’t ignore neurological symptoms such as numbness and weakness; if you suspect a wrong diagnosis, get a second opinion; and don’t be afraid to change medications due to side effects, or your MS symptoms are not well-controlled. As Macalaster-Klapprodt said, “Today, thanks to my amazing specialty neurologist, I feel like myself again!”

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